A phenomenological perspective on contributors to positive physical self-concept in women with intellectual disability

Positive physical self-concept refers to holding favourable views about one’s body, encompassing perceptions of physical appearance and abilities (Owens and Samblanet, 2013). Individuals with positive beliefs about their physical body experience higher self-esteem, greater engagement in self-care behaviours and improved overall mood compared to those with negative body beliefs (Salaun et al., 2014; Tylka and Wood-Barcalow, 2015). However, for women with intellectual disabilities (ID) experiencing distinct cognitive and social experiences (Reel and Bucciere, 2010), there remains little understanding of what factors shape perceptions of physical self-concept. This lack of focused exploration is concerning given the intersection between ID, gender, health inequality and social exclusion (Merino et al., 2024). As such, identifying contributors to positive physical self-concept in a population with experiences unique from women without ID may provide insight into how heightened psychological vulnerabilities associated with low physical self-concept in women with ID could be addressed.

In western cultures, societal beauty norms prioritise facial symmetry, thinness and features aligned with traditional Anglo-European appearance ideals (Figueroa, 2013; Fink et al., 2006). These idealised traits are reinforced across the community via the media, actively contributing to women’s body dissatisfaction (Merino et al., 2024; Reel and Bucciere, 2010). These narrow, ableist beauty ideals reinforce barriers that marginalise individuals whose appearance may not conform, such as women with ID. Like peers without ID, women with ID report negative views of their appearance, where their facial features and weight differ from the internalised ideal (Anschutz et al., 2009; Appleton et al., 1997; Merino et al., 2024). For women with distinct physical features that fall outside ableist, western beauty ideals, this may amplify the risk of low self-concept (Casanova et al., 2018; Schmitt et al., 2017). In addition, differences in digestive, metabolic and eating behaviours that can lead to weight gain in women with ID further compound these physical self-concept challenges, paralleling patterns observed in populations of women without ID (Begarie et al., 2011; Klomsten et al., 2004; Macia et al., 2015; Wilgenbusch and Merrell, 1999).

Beyond appearance, perceptions of physical abilities may contribute to lower physical self-concept. Many women with ID experience motor and coordination difficulties, which can result in dissatisfaction with body parts that are associated with functional limitations (Cleaver et al., 2009; Westendorp et al., 2011). Gendered cultural beliefs about physical ability, in which women perceive their physical competence as lower than that of their male counterparts, can exacerbate dissatisfaction (Begarie et al., 2011; Duvdevany, 2002; Eden and Randle-Phillips, 2017; Pan et al., 2018). While individuals with ID process information about themselves differently from those without ID, individuals with mild and moderate ID can integrate both positive and negative information to sustain a balanced self-view (McCabe et al., 2006; Rose et al., 2000). Compared to others, people with ID often occupy insular social networks in which family members and caregivers are often the only members without ID (Harrison et al., 2021). Positive attitudes within these networks have been shown to promote higher physical self-concept, while limited opportunities for social comparison with people without disability may act as a protective factor against low physical self-concept (Duvdevany, 2002).

The self-concept model provides a useful framework for understanding the development of positive physical self-concept and may be helpful in understanding if differences in physical self-concept in people with ID are influenced by cognitive appraisal processes or, rather, the distinct social environments inhabited by people with ID. This model proposes that the appraisal of everyday behaviours across physical, social, emotional and academic domains informs individuals’ overall self-concept (Shavelson et al., 1976). Specifically, it suggests that physical self-concept is shaped by two central dimensions: ability (perceptions of physical capabilities) and appearance (perceptions of what their body looks like). This model has been found to be applicable across diverse populations, including variations in intellectual ability, age, gender and nationality (Marsh and Shavelson, 1985; Shavelson et al., 1976).

In considering the unique contributions of both cognitive processes and the influence of distinct social environments on physical self-concept in women with ID, this study aimed to address the following questions:

This broadened understanding can be built upon in future research to support the development of inclusive and accessible personal, social and community-based interventions that promote body positivity, self-esteem and wellbeing in women with ID.

Data was collected through individual, face-to-face semi-structured interviews, which were designed to align with the qualitative phenomenological design adopted to enable the exploration of participants’ lived experiences of physical self-concept, ensuring priority was attributed to unique expressions of meaning applied to their subjective experiences. Using this highly flexible framework also enabled accommodations to be made for individual cognitive and communication preferences, ensuring the study remained accessible and inclusive (Braun and Clarke, 2006). Our approach enabled participants to elaborate on experiences not anticipated by researchers, ensuring researchers’ assumptions were minimised and that the lived disability experience of women with ID in this study was accurately represented (Braun and Clarke, 2013).

A purposive maximum variation sampling strategy was employed, with eight service initially approached to assist with identifying participants for the study. Four providers were ultimately selected to maximise heterogeneity in age, intellectual abilities, physical disabilities, geographical locations and socio-economic status of participants.

Iterative questions, such as “what do you like about your body?” followed by “is there something about your body that you like the look of?” were used to identify and clarify any inconsistencies in participant responses.

Themes were developed using a two-part inductive/deductive analysis, using Braun and Clarke’s (2006) six-phase approach to thematic analysis. This approach was selected for its ability to identify patterns of meaning across participants’ narratives, ensuring that the phenomenological themes generated accurately reflected lived experiences, which could then be mapped to the features of Shavelson et al.’s (1976) self-concept model. An appropriately qualified independent researcher, familiar with Braun and Clarke’s (2006) approach to analysis, was randomly allocated one-third of the transcripts to review and analyse. Divergence in theme groupings were examined iteratively until the authors and independent reviewer collaboratively agreed on the themes and sub-themes. Upon further independent review, this phase was repeated, allowing for further refinement of themes and naming. The authors and independent reviewer re-examined the transcript coding and themes until consensus was reached on coding rules and theme names.

Purposive maximum variation sampling was used to recruit women aged 18 or over, diagnosed with a mild or moderate ID. See Table 1.

The presence of a mild or moderate ID was confirmed by service providers, who held this information as part of their funding agreements. This evidence was confirmed by the researcher. Fifteen participants were interviewed, with two subsequently excluded from the analysis due to insufficient data to confirm a diagnosis of ID, and another excluded due to a high level of acquiescence and response inconsistency during interviewing, indicating that her responses may not reflect genuine personal experiences (Finlay and Lyons, 2002). In all cases, a two-step consent approach was used whereby participants and support persons were informed about the study, followed by a minimum of 24 h before further contact to discuss interest in participation.

The women in this study shared similar backgrounds (white women, born in Australia), reflecting the predominant ethnic mix of the region where the study was conducted. However, participants represented various relationship statuses (e.g. single, casually dating, long-term partner), allowing for some heterogeneity across the group. Participants in this study did not have children.

Ethics approval for this study was granted by the University of Sunshine Coast Human Research Ethics Committee (Approval number: S181255). Recruitment material included an easy read research project information sheet, which described the research aims, methodological process and ethical approval. Participants and their support persons completed a brief demographic questionnaire. Interviews were audio recorded on a laptop computer and subsequently transcribed by the first author.

Participants who indicated their interest in the study were asked structured questions to confirm their capacity to provide informed consent. Participants who did not demonstrate capacity, or chose support persons to provide consent, were asked questions to assess their assent to participate, and their support person (or formal decision maker in the case of those without capacity) completed the consent form. Participants and their decision maker/support person completed the demographics form and then completed the interview. An interview schedule comprising seven open-ended questions and optional associated probe questions was used. Interviews were conducted by a Clinical Psychologist in training and ranged between ten and fifty minutes. Iterative questioning was used involving the rephrasing of questions to identify inconsistencies in participants’ answers, enhancing confirmability and dependability of findings. The researcher repeated the same question using different wording, using open and closed questioning and summarising followed by further prompting. This was done to moderate response bias, given that people with ID demonstrate greater acquiescence to those without ID, attributed to greater difficulties comprehending questions or greater interest in providing answers that “please” interviewers (Finlay and Lyons, 2002). Interviews were transcribed verbatim into Microsoft Word, and then analysed and grouped into themes or sub-themes using Braun and Clarke’s (2006) six-phase approach to thematic analysis.

Participants described multi-dimensional experiences related to both ability and appearance, which contributed to their positive physical self-concept as women with ID. The themes identified are linked to the dimensions outlined in the self-concept model (Marsh and Shavelson, 1985), as described below.

Several women noted that participating in self-care activities, which allowed them to take care of their bodies and manipulate their physical appearance, led to positive perceptions of their physical appearance and abilities. Many women enjoyed experimenting with their clothing and hairstyles, as well as using accessories such as jewellery or tattoos to accentuate physical qualities they valued highly. One participant shared:

This process was reflected as one that brought joy and affirmation, enabling woman to achieve congruence with their strong sense of self, countering less positive societal stereotypes. Admiration of unique features, irrespective of their broader applicability to beauty ideals, was discussed by several women as a strength that was embraced. One woman, who liked how her two canine teeth protruded, said:

Autonomy in daily personal care activities further contributed to positive perceptions, being described by participants as nurturing acts that reinforced their physical and emotional wellbeing. Satisfaction in achieving high standards of self and personal care appeared to act as resistance to societal pressures that accompany society’s appearance ideals. Some women overtly expressed rejection of external beauty ideals, noting the value that their unique body and appearance offered, expressed by one participant as:

Being able to care for oneself autonomously and make individual choices that accentuate preferred features and reject limiting views of outsiders appeared to support a positive physical self-concept in participants.

Women reported that affirming positive and reframing negative thoughts about their bodies enhanced physical self-concept. Some participants reflected on their process of consciously adopting supportive thinking patterns, engaging in daily positive self-reflections and affirmations about their body’s ability. One woman reflected:

Others who reported significant challenges with appreciating their appearance identified consciously challenging those negative thoughts. This was discussed by one women:

Reframing perspectives through acknowledging the value of diversity in appearance and ability enabled unique characteristics to be embraced and celebrated.

Positive self-concept was further enhanced through achieving autonomy and self-efficacy. Feeling capable of making choices, pursuing goals independently and undertaking challenging or skilful activities enhanced women’s self-concept. Whilst the activities reported by participants varied widely from self-care and emotional regulation to learning how to paint or dance, a focus on independently achieving goals and feelings of pride in overcoming challenges supported positive ability self-concept. One woman appreciated her skills in personal care:

Women reported that achieving self-efficacy in these valued tasks and activities sponsored a sense of mastery and confidence, affirming individuals’ appreciation of their unique or valued physical abilities.

Participants expressed that their engagement in meaningful activities enabled experience of autonomy, competence and fulfilment, which contributed to both their physical and social self-concept. Physical self-concept was promoted through reinforcement of belief in their body’s ability to engage in a diverse range of activities that enabled connection with self and others. Individual physical endeavours, such as walking and dancing, offered opportunities to exercise and feel present and capable, while simultaneously enabling freedom and autonomy in the community.

Creative hobbies such as painting and woodworking offered both opportunities to demonstrate competence and feelings of increased independence through demonstrating choice to engage in enjoyable and meaningful pursuits that aligned with personal interests. When linked with the opportunity to generate income (e.g. by selling items they had made), these pursuits added to feelings of increased self-sufficiency. One woman explained:

Participating in social and community-oriented activities, such as performing arts, watching bands and contributing to advocacy groups, acted as a medium for social connectedness. These relationships with others fostered feelings of strong interpersonal connection and self-esteem, affirming support from others. One woman said:

Having supportive social and community connections promoted women’s willingness to engage in new and challenging activities, which included overt peer support (complementing appearance, affirming ability, encouraging engagement in novel activities) or an absence of judgment or criticism. Being able to engage in these opportunities and communicate positively promoted positive self-expression along with personal growth and fulfilment.

This study aimed to identify the experiences and behaviours that enhance physical self-concept in women with ID. The findings identified a range of mechanisms and associated psychological benefits. Physical self-concept was enhanced through engagement in meaningful activities, connection to others and active participation in affirming appearance and thinking behaviours. These mechanisms positively influenced both appearance and ability aspects of self-concept, consistent with previous findings (Ayaso-Maneiro et al., 2014; Carmeli et al., 2005; Pan et al., 2018). Our findings support evidence that women with ID critically evaluate information about their identity (McCabe et al., 2006; Rose et al., 2000) when developing their physical self-concept, and find value in altering and accentuating unique aspects of their appearance that reflect their identity, further enhancing physical self-concept (Baudson et al., 2016; McCarthy, 1998; Wang and Yu, 2023). Interestingly, the responses of women who were single or dating included in this study focused on the importance of their physical self-concept, whilst women in longer-term relationships, who still acknowledged the value of accentuating appearance, tended to find greater value in ability-related mechanisms. This difference may also be attributed to age, given that younger participants were less likely to be in longer-term relationships at the time of the study.

Our findings support the multidimensional contributors outlined in the self-concept model, which has previously demonstrated good validity across ID populations (Maïano et al., 2009; Maïano et al., 2011), offering a framework that may support improved understanding of appearance and ability-related self-concepts in women with lived experience of ID. Novel mechanisms identified in this study, including psychological benefits of having autonomy in personal care, feeling satisfied with one’s appearance and actively participating in supportive, connected communities, highlight additional pathways through which women with ID may build positive physical self-concept.

Self-efficacy emerged as a key theme across participants, supporting its importance in enhancing the self-concept of people with ID, as identified elsewhere (Carmeli et al., 2005). Self-efficacy theory provides a framework for conceptualising these findings, proposing that self-efficacy is influenced by mastery experiences (prior success), vicarious experiences (observing others engaging successfully in tasks), verbal persuasion (suggestions from others of competence) and emotional states (positive moods during tasks; Bandura, 1997). Participants described everyday experiences that allowed for independent demonstration of mastery and autonomy as ones that enabled appreciation of individuals’ unique abilities and sponsored increased self-esteem, consistent with prior findings (Björnsdóttir et al., 2015; Stock et al., 2013).

Successfully regulating emotions through reframing cognitions and active use of affirmations added to these mastery experiences for participants in this study, further increasing physical self-concept. Given that negative mood states reduce self-efficacy and self-concept in the general population (Henderson et al., 2006), supporting increased emotion regulation skills may play an important role in enhancing self-efficacy in women with ID and minimising the time spent experiencing distress (Chapman et al., 2006; Garofalo et al., 2016). Engagement in activities that promote positive emotional states, such as autonomous self-care, participation in preferred activities and meaningful connections with others may serve as practical strategies when promoting both wellbeing and positive physical self-concept in women with ID.

Participants described how positive interactions with others via social and community connections enhanced feelings of belonging and connection. Receiving affirming messages from others, such as compliments on appearance or encouragement when engaging in new activities, improved participants’ positive physical self-concept. This supports self-efficacy theory’s assertion that verbal persuasion can strengthen beliefs in competence and aligns with research that demonstrates the importance of supportive social networks for people with ID (Bandura, 1997; Peterson et al., 2008). These social supports mirror studies with women without ID, where social support, peer acceptance and friendship have been found to enhance body satisfaction (Stice and Whitenton, 2002). This may suggest that positive peer interactions and engagement in strong community connections may work together to foster positive physical self-concept by reaffirming positive internalised cognitions of women’s identities.

Although several affirming cognitions made by participants in this study involved comparing themselves to others, the impact of vicarious experience on physical self-concept was not prominent. Previous findings that social networks comprising people with ID led to positive physical self-concept (Duvdevany, 2002) suggest that perceiving others as performing well may enhance physical self-concept by increasing self-efficacy. Our findings suggest that further research is required to understand the extent to which vicarious experiences contribute to self-efficacy and physical self-concept in this cohort.

Some methodological limitations may impact the generalisability of these findings. Member checking, which enhances scientific rigour by having participants read their transcripts and provide feedback regarding accuracy, was not used due to the limited literacy skills of many participants. Similarly, data triangulation was used minimally by supplementing interviews with a demographic form, partly due to the limited available quantitative measures of physical self-concept validated on ID populations (Finlay and Lyons, 2002). Increased variance in the demographics of women with ID, particularly in relation to race and parental status, would be valuable to explore, as would any relationships between this study’s themes and self-concept theory (Bandura, 1997). Despite some limitations, these findings provide tentative evidence for practical ways to support women with ID in enhancing their physical self-concept by improving engagement with identified mechanisms through practical strategies to achieve associated psychological benefits.

These findings demonstrate the complex relationship between the multidimensional mechanisms that shape positive physical self-concept and resiliency psychological benefits in women with ID. Several themes converged with the self-efficacy theory, highlighting the importance of agency, connection and positive emotional regulation in fostering positive perceptions of one’s physical self.

This research received no funding from public, commercial or not-for-profit sectors.